They’ve already produced a major hit: a study that found a potential biomarker for post-exertional malaise.
The lead author, Rob Wüst, is a young scientist in the Netherlands who not only studies exercise but also participates in it daily. He told me he had always thought that exercise was good for everyone, even those suffering from a chronic disease. But when he received a call from a long Covid clinician looking for answers, he was ready to jump in. He told me that his work would have come “to an almost complete stop without the Patient-Led funding” because traditional funding sources are so agonizingly slow. Patient-Led, on the other hand, was small and nimble; when the group saw the proposal, it funded the study. That “was extremely valuable to keep the speed in our initial research,” said Wüst.
I spoke with Gina Assaf and Lisa McCorkell, two of the founders of the collaborative, about what it seeks to do next. Out tumbled a list of goals: publicize key research findings better so they are available to scientists as well as patients, fund more research, do more effective advocacy. “We have so many ideas,” Assaf told me, “but not enough money.”
McCorkell told me that the success of the group’s first round of research funding proved the value of having patients involved in these funding decisions — and in circumventing the lumbering medical bureaucracies that have taken much too long and accomplished much too little.
